Measuring changes during graded exposure & acceptance treatment

I have been pondering about the best way to monitor ‘Matt’s progress during graded exposure therapy for his avoidance of activities involving back movement. I introduced you to Matt yesterday. He’s a ‘man’s man’, a real bloke who, for the past four years since he had surgery for a prolapsed disc, has avoided things like mowing the lawns, making the bed, fishing and whitebaiting and even golf.

Yesterday I described how we went through 100 photographs of activities of daily living, and of these, Matt identified 67 of the photographs as things he wouldn’t do because of his concern about both the impact on his pain and the ‘strain’ on his back.

I have used a simple count of the number of photographs a person decides is in the ‘avoided’ pile as one way to monitor and measure progress, but it’s not an especially revealing measure if I’m wanting to explore the factors that may be influencing this avoidance. After all, there can be several things that can contribute towards avoidance – in Matt’s case, he indicates that he’s worried about experiencing fluctuations in pain intensity, so it could be that one of the factors relevant to him is his catastrophic belief that he ‘can’t cope’ with high levels of pain. Alternatively, it could be due to his belief that pain is an indication that his back is being further damaged. Or it may be because of something that he can’t yet voice, perhaps something that he doesn’t completely identify.

As part of the intake battery of questionnaires, I do already have scores from his Tampa Scale for Kinesiophobia, his Pain Disability Index and Pain Self Efficacy Questionnaire. The TSK, as I think I might have mentioned at one time, doesn’t always have great predictive value in the case of people who have been well-informed about hurt vs harm. The TSK has two subscales, one is about activity avoidance while the other is somatic awareness – but I’m guessing that for people who have information about hurt vs harm, the somatic awareness subscale doesn’t tap into the concerns that these people have. Maybe this is because they’re not exactly sure what is driving their tendency to avoid (remember that questionnaires are not x-rays of the mind! They can tell you anything more than what the person will tell you, so if someone is unaware of their beliefs, a questionnaire won’t reveal it either).

The Pain Disability Index is a fairly broad measure of perceived disability on 10 areas of function. It’s well validated and used widely – but it’s not especially sensitive to change during treatment, and it doesn’t measure details about how the person goes about their activities. What this means is people who use subtle avoidance behaviours, or safety behaviours, may not score particularly high on the measure, despite having constrained their participation in many of their normal activities.

The Pain Self Efficacy Scale looks at confidence to carry out activities despite pain – and so should be a reasonable measure especially in people who are avoiding activities because of lack of confidence. The problem in Matt’s case is that he doesn’t lack confidence – he just doesn’t believe it’s good for him to carry out movements that hurt, and so he doesn’t. He still manages to get activities done – but the way he carries them out continues to perpetuate his belief that he shouldn’t move his back too much.

The work that is being undertaken using acceptance and commitment therapy (ACT) has identified another dimension or construct that could be important to measure. There are two major constructs that ACT considers important: the willingness to carry out activities despite discomfort or negative feelings or thoughts; and ‘cognitive fusion’, where along with the words we use to describe events or situations, we also experience the emotions and sensations – as if the words and the construct that is being described by the words are one and the same. So we believe that ‘pain’ (the sensation) isn inevitably and always ‘bad’ – even though there are times when experiencing pain is not bad (like that wonderful feeling after you’ve been out for a long walk and come home ‘tired but happy’ and a little footsore, or that lovely pulling pain that you feel when you stretch). As so many researchers have pointed out, it’s not the pain itself that’s bad – it’s the meaning of the pain and the fear that pain represents something threatening that is the problem.

To be willing to do activities despite discomfort (negative feelings etc) in the pursuit of living out important values is one of the most important constructs that clinicians working in chronic pain management try to modify. We constantly ask the people we work with to experience ‘some’ pain while starting to return to activity. It might not be a lot of pain, but regaining function almost inevitably means some fluctuations in pain and usually it gets a little more uncomfortable before we habituate to it. It’s a bit surprising, then, to find that a measure of ‘willingness’ or ‘acceptance’ is not commonly used. There are two questionnaires at least that I know of that could be helpful in this regard – the first is the Chronic Pain Acceptance Questionnaire, by McCracken and colleagues (2004) – this is a measure that has been found to have two subscales: activities engagement and pain willingness.

The second is a new one that forms part of the Psychological Inflexibility in Pain Scale (PIPS), developed by Wicksell, Lekander, Sorjonen and Olsson (2010). This questionnaire has, like the CPAQ, two subscales – avoidance and cognitive fusion.

In the paper I’ve referred to, this has been used in a large study of 611 participants with neck pain following whiplash. It correlates well with the CPAQ, and the TSK, and explains more variance than the TSK in things like pain, disability, life satisfaction and depression. It’s also been found to mediate the relationship between pain and disability, and the authors suggest that it may be useful measure to use during therapy, to monitor progress.

I’m hoping to take a further look at this scale, and with Matt’s permission, I hope to use it during his treatment. I think it could well measure some of the most important aspects of his presentation because it doesn’t look as much into fear of harm, but more about how much thoughts and beliefs about pain interfere with activity engagement.

This is such a new area of measurement – and what I think it starts to unpack are the underlying variables that influence that final outcome, the one we’re all looking for: increased activity and participation in life. I’m sure there will be much more activity in this area of research into pain management in the next few years than we’ve seen before.